My Three Words For Sickle

I’m very fortunate that I work in an environment where I meet incredibly clever individuals at the top of their game, so I have no doubt that, as these experts say, sickle cell patients are getting a better deal now than perhaps 30 years ago. With the use of available medication like Hydroxycarbamide, sickle cell patients are now, in fact living longer than they did in the past, although most still face everyday challenges such as difficulties finding and remaining in suitable employment. Not to generalise here, but I think it is fair to suggest that most sickle cell patients continue to deal with daily issues like joint pains, lack of energy [fatigue], shortness of breath and regardless of how well they are doing on this wonder drug – Hydroxycarbamide – they are never far away from the next sickle cell crisis.

I’ve often wondered how much it costs a healthcare provider to keep a sickle cell patient having crisis in hospital for one night. In the UK where we have the National Health Service (NHS), there is no doubt it costs several hundreds of pounds. Majority of sickle cell patients I meet in my line of work, tell me that they don’t like being admitted to hospital, meaning they only go in as a last resort. Of course there would always be those situations where hospital admission is the safest thing to do. This is commonplace in the management of sickle cell disease.

So what if we actually found a better way to keep sickle cell patients well and stable in their own homes? I like to think that some, if not most, would opt to remain at home, cared for by family and friends. With the right specialist advice and support at home or in the community, either through specialist sickle cell nurses or via some form of digital innovation – I’m a bit of a digital health innovations enthusiast – it is possible that most patients would recover quicker from crisis and therefore, the overall cost of caring for a sickle cell patient could also be much lower than it is now. The psychological impact of being stuck in a hospital bed for days, weeks, even months sometimes could also be reduced. I’m not an expert on this issue but I can imagine how I would feel being admitted to hospital so frequently, for long periods each time. I would certainly be looking for other ways to reduce the emotional distress even if it means taking risks with my health. In the Sickle world, we do know that this is something that actually happens.

The UK is a case in point where the welfare system could potentially be the answer. Welfare benefits such as Personal Independence Payment (PIP), Disability Living Allowance (DLA) and Direct Payment (DP) could be reformed in a way which allows genetic conditions such as Sickle cell Disease (SCD) to be supported differently. Currently, some sickle cell patients have in fact been awarded DLA for an indefinite period, possibly in recognition of the fact that SCD is a genetic condition, there is no cure for it and progressively, sufferers do get worse. Of this, somewhat lucky group, most of them would have fought the system long and hard before being awarded this vital support. DLA is not a fortune but it certainly does help people to maintain a reasonable level of independence in the community. It’s a lifeline for many. The bad news is that as part of UK government welfare reform, every single one of these awards are being reassessed. Everyone on DLA now needs to apply for PIP, which is the new benefit replacing DLA for anyone from the age 16 to 64. A lot of disabled people, including sickle cell patients have lost their benefits in this process of switching from DLA to PIP and not all of them manage to get their entitlement reinstated even at the benefits tribunal. There are a lot of reasons for this and I have written a blog or two about some of the problems so I won’t touch on them in this piece.

In a way, the difficulties sickle cell patients have applying for and getting welfare benefits has a lot to do with the symptom fluctuations and the general unpredictable nature of SCD itself, but that’s just a small part of a much bigger problem in my view.

So why is it so difficult for sickle cell patients to get welfare support?

I haven’t worked in the sickle community long enough to be able to definitively answer this question, but what I do know is that better awareness of the condition would make my work as a Welfare Support Adviser For Haemoglobinopathies much easier. In other words, sickle cell patients would get a better deal out of the welfare system if awareness was better. So why is awareness of sickle cell disease so poor?

I’ve entitled this piece “My Three Words For Sickle” for a reason. Disjointed, Advocacy, Stigma. These are my three words. How do these words fit into the awareness or the lack of it, in this discourse, you might ask? What I would like to do is to discuss all three separately partly because I don’t won’t to stress you out too much with my moaning and ranting by writing too much. So, I will be back in the coming days to talk about the first word – Disjointed.